I am a registered nurse,and when my husband was diagnosed with SCC three months ago ,i never for one moment thought that i wouldnt be able to cope with the perilous journey that he had to take.
How wrong can you be.Robin is possibly the worst patient i have ever encountered in thirty years and believe me i have met a few.From the day he was told he had cancer its been like riding the biggest roller coaster in the world.
First he got drunk -not surprising
Then he was not going to let them cut him up -also not surprising.
Then he was going to kill himself - a reaction i was expecting knowing his past experience with his father and cancer
I weathered those first few days and talked him through all the reasons he should not take any of the the above courses of action.
Next came the hospital admissions - To say Robin has a phobia about hospitals is the understatement of the year

The tongue biopsy and laser excision went well he was only in hospital for 8 hours,and recovered very well.
The bilateral radical neck dissection and removal of 5*6cm tumour saddlebacking the jawbone on the opposite side ,was a different ball game.By the time he went into hospital the tumour was huge and the pain excriating,and all he wanted was to be able to eat and sleep and have no pain.From the minute he set foot in the hospital he behaved like a petulant child and after 7 1/2 hour surgery and 50 staples in his neck he took his own iv line out and walked out of the hospital 36 hours after surgery.More by luck than judgement he recovered well,but his behaviour now is bordering on the bizarre.
His favourite phrases are
"I'm not taking that"
"What would you know"
"Its not happening to you its happening to me"
He is unpleasant ,aggressive , impatient self centered,and seems to have a very low tolerance for any sort of pain.
He has the worst case of neuralgia on the side of his face that the secondary was on and in his teeth,and every thing i try to do to make him more comfortable and pain free is met with derision and scorn.We are sleeping in seperate bedrooms because he has to have all the windows shut and the central heating on all night to try and counter the pain in his face and he throws his knife and fork on the floor everynight i make him a meal because his jaw is so stiff he cant eat.

How the hell am i going to get him through 30 radiotherapy treatments?
More to the point how am i going to get throught it?
How selfish does that sound?I have two new Grandaughters,a son,a daughter and a mother who live 300 miles away and i havent seen any of them since november last year except mum who came to stay while robin was in hospital and for a week after he came home.MY whole being revolves around this ungratefull unloving semingly uncaring mass of anger that used to be my husband.
What will the radiotherapy do to him?
I know all the practical problems, but will he implode mentally?If he doesn't will i?

First of all, I would like to ask an important question. Is this behaviour normal for Robin? If it is not, if he is usually a calm, laid back kinda guy, you need to think about getting him another Head CT, and look for other sites of tumor activity. Abnormal behaviour can be a sign of intense grieving, or it could mean a metastasis. I sincerely hope he is just being a first class PIA, a good kick in the rear will cure that.
Good luck,
Andrea

Whew! Liz, it really sounds like you could use a break! Robin must be in a lot of pain, physically and emotionally to be reacting the way he is, but you certainly don't deserve to be treated that way. Have you talked to his doctor about whether he might need medication to handle the stress or some talk therapy with someone experienced with cancer patients? Does Robin have anyone he can talk to (besides you) about what he is going through? As CG to my son there were times when I felt he wasn't doing the things he should to recover and I could tell he was in a lot of pain. At one point when he wouldn't eat or drink anything, I even yelled at him telling him I did not want to be the only one trying to get us through this whole experience of cancer and that he had to help, too! And then I walked out and drove home, crying all the way and feeling very guilty about having yelled at him. We did get through it and things are so much better, now. Of course you will get through it, too. According to other posts I've read, seems like being irritable sometimes goes along with the recovery process. In the meantime, think about doing something nice for yourself.

Wow, Liz! You are experiencing many challenges.
Andrea and Anne-Marie offer excellent suggestions above.
Even with no credentials to offer expert advice, I can only tell you that you are welcome here to say anything on your mind.
Many of us caregivers have been on the receiving end of anger, resentment, threats and no cooperation. We experience guilt at our inability to help. We feel ashamed to even be thinking of ourselves and how we will get through this. We grieve for our previous life and what was important to us.
You will get through this, one day at a time and experience many changes in both of you.
What won't change however, is you will always have someone to listen to you here.
Ginny, caregiver to Mike

Wow
how great is this place. Just being able to get all that stuff off my chest made me feel like a different person this morning.I think i realised that no one expects more from Robin than he does of himself,and he sees this illness as a sign of weakness.Robin hasnt seen a Doctor for 15 years and unfortunately our GP has decided that now he has him between the cross hairs he will take the opportunity to catch up on some over due maintenance .I think i have worked out for myself that with a diagnosis like his ,that he has enough to take on board for now,and our GP telling him he has hypertension,high cholestrol and needs to stop smoking ,is perhaps too much all at once.Starting Rob on meds for these problems all at the same time when he previously has never taken tablets for anything i think is overload.
I have taken the unilateral decision that we should concentrate on the cancer and the treatment for now and put the meds away till after his radiotherapy.As for the smoking he has managed to go for 4 weeks but his stress levels are so massive that i think he should be allowed the odd crisis point cigarette till after his treatment.
The pain he is in has been caused by surgical damage to his trigeminal nerve,causing trigeminal neuralgia a condition i recognise as being one of the most excruciatingly painful things that you can experience.The hospital have started him on amitryptilline 10mg nightly but the effect in relief of chronic pain is cumulative and may take up to two weeks to kick in.(at first he chucked the meds in the bin because he read that they are for use in depression i had to go online and show him that very small doses are used in the relief of chronc pain management).So today i will research all possible ways to relieve this terrible pain and see what i can do to help.
In answer to a question asked in the above replies,Robin is a typical stereotype hard working hard drinking working man .The only thing i think you have in america that might compare is your phrase "Red Neck" (if i have used the wrong analogy i apologise).But inside he is a frightened little boy and i need to keep focussing on that.Thank you so much for having this wonderful place to come to .I am sure i will need it on many occasions over the next couple of months
god Bless

Liz,
"Blue collar" would be another appropriate term. Yes, cancer patients can be a royal pain in the arse! He does have a right to adequate pain management though and it sounds like some anti-anxiety meds might not ne a bad idea either. I fainted in the exam chair when I got my Dx. I was scared sh*tless too. You can't can't "tough" your way out of this. The treatment will beat the living crap out of you - especially the radiation. The pain can hit a "10" so he will HAVE to have major pain management, probably with some serious long term opioids, like Fentanyl (Duragesic patches) and morphine (for breakthrough pain). Liquid morphine, taken orally, takes about 3-4 minutes to work.

I never liked doctors much either especially once they have you in "the system". I tolerate them now. The other medical issues could have a negative impact on his response to radiation so maybe the objective is to "tune him up" prior to starting therapy.

He can fight it - it's his choice to be as miserable as possible but it will break him eventually.

Smoking & drinking, post surgery, are a very bad idea and are a strong possibility that is what caused it to begin with. The real "weakness" is the inability to deal with known addictive behaviour. He will have to make some serious choices about his lifestyle in regards to his long term survival. You can't force him.

Liz, When you lay out the evidence there is a perfect reason for his behavior.
1.In a lot of pain
2.Trying to quit an extremely addictive habit(Smoking)
3.Dealing with a life threateninmg disease (cancer)
4.The biggest reason of all- He's a MAN.
1+2+3+4= Major league A##HOLE.
The above formula leads us to #5-- Somehow we find a way to get thru this craziness, you have a lot of help here. Expressing your feelings is a good way for you to feel better, Keep up the good work.
Always,
Mark.

As the day for treatment to start gets closer Robin is getting quieter and much calmer.He went for a long session with the dental hygenist this morning and is now at work.The side of his face suddenly swelled up yesterday and now he looks like a hamster with its pouch full.The dentist was not concerned and thought it not unusual although i worry it might affect the fit of his mask.I have taken all your advice on board and i stocked up on perfume and metal free toiletries,zinc supplements,soft tooth brushes, sensodyne toothpaste,alchohol free mouth wash,aloe vera gel and i just have to get washing powder and fabric softner in the eco range that is perfume free.I just cannot find out where to get Carnation Breakfast food in the Uk can anyone advise?This site feels like a life line to me and i am grateful to every one of you who has taken time out of your busy lives to share your experiences with me and offer advice

much love

Hello Liz.
I just read your post today.
I tried to find an answer but you must call Mon. thru Fri. only. I will Try Monday.

You may try www.carnationinstantbreakfast.com

I tried the "store locator" but it's all USA.
You might try on your computor, maybe they will have the UK listings.
I'm praying things are going "smoother" for you. Hang in there! We do not wan't you to have to change your name from cookey to KOOKY! :}
Also, my freind Lindsey lives in London, and I'm sending her an e-mail, asking her to to check it out "straitaway" as she likes to say.
GOOD LUCK, PeteyB

Hello Cookey
I just realized you posted the message about carnation breakfast awhile ago.(3 wks)
Anyway, my freind in London said she was not sure and would check at her nest shopping trip.
She said to try Sainsburys, Tescos, Waitrose, or a health food store.
But she did say there are carnation products there. Not sure about the 560 calorie one.
PeteyB